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Information on the latest vitamin D news and research.

Find out more information on deficiency, supplementation, sun exposure, and how vitamin D relates to your health.

Hi all, this is my first question at the council site, please be gentle :) I had been feeling particularly ill for a couple of months and gradually went down hill very fast. I had thought I had low potassium as I'm on a medication (fludrocortisone) that balances sodium and potassium, for POTS condition. But the consultant ran a full blood panel and found they were ok and the one stand out result was very low vitamin d at 19. She's then put me on a course of vitamin d supplements, its made by thorens and is an oral solution at 10,000 iu per day for a week, then 10,000 iu per week for 3 months. When I first started the course it perked me up and I felt better. Then 3 days in to the intense first week and I'm finding I'm peeing a lot, feel dehydrated and I'm tired too. I'm wondering if I'm overdosing too much at 10,000 iu right away? I'm only 5 ft tall (I'm male) and I'm just wondering what you guys suggest or any advice you can give. Thank you.

Ask the Vitamin D Council

Asked by  Gavin on May 31, 2016

Answers

  • Gavin
    Participant
     Gavin on

    See title

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    Gavin you can ask as many questions as you want.
    I am not a doctor but yes you appear to be overdosing. You have symptoms of Hypercalcemia. Those symptoms include: feeling sick or being sick, poor appetite or loss of appetite, feeling very thirsty, passing urine often, constipation or diarrhea, abdominal pain, muscle weakness or pain, feeling confused, feeling tired and bone pain. You need to stop the Vitamin D and tell the doctor who may want to look at your calcium levels. (Once you stop the D, I do not know how long it takes for calcium levels to return to normal. So the test should be done probably fairly quickly.)
    Now some people have problems taking any amount of Vitamin D and you can read about it here at http://www.vitamindcouncil.org/further-topics/vitamin-d-hypersensitivity/.
    Now at this point I do not know if you have one of those conditions or you just cannot take that high amount of Vitamin D.
    You have a very low Vitamin D level and the amount they gave you was not outrages but might be for you. Usually more Vitamin D is given “upfront” when someone is very deficient and then a “maintenance dosage” later. For a maintenance dosage we recommend 5000iu a day for a weight of 150lbs. Since you are only 5′, I am assuming that your weight is not that high but I do not know.
    So it could be just too much or a “hypersensitivity” issue. If you have any more questions just ask.

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    Hi IAW,

    I looked at the conditions list. I dont have any other those conditions. I do seem to appear more tired and a bit spacey for a while after taking the 10,000 dose.

    One thing I was surprised is how high the calcium was when she did the blood tests. It was 2.38 , which the consultant said was normal. I’m from UK. I wondered how it could be high as I dont drink dairy milk and have a limited diet. I’ve since remembered that the rice milk I had is fortified with calcium, and also the bottled water I drink has 55mg of calcium in. So I’ve cut these out now completely.

    I’ve heard vitamin K2 can help get the calcium out of the blood in to the bones? I have ordered some K2 that will arrive tomorrow. Do you recommend I take the vit K2 ?

    I’m 126lbs. I think I converted that correctly.

    Thank you IAW for replying.

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    Gavin you said ” I’m finding I’m peeing a lot, feel dehydrated and I’m tired too”, so you have three of the symptoms and yet you say you have none.You do not have to have ALL of the symptoms in order to have hypercalcemia..
    Then you said “how high the calcium was when she did the blood tests…it was 2.38 , which the consultant said was normal.” It was normal before taking the Vitamin D. The range in the US is 2.2 – 2.7 so you were normal. Why are you saying it was “high”?
    I am not trying to be insulting I am worried because you are not quite making sense. One of the other symptoms is “confusion”. You really need to contact the consultant and stop taking the Vitamin D until you tell them what I said!!

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    IAW, I’m not saying I have none of the symptoms. I agree with what your saying. It’s difficult to contact the doctor as its a consultant at a hospital and they are difficult to get ahold of, and my local doctor (GP) seems to dismiss vitamin d deficiencies.

    I’m going to stop the vitamin d supplement. I was just asking that if I stop the vit d, and take some vitamin k2, will that help push the calcium from my blood in to my bones?

    If it doesn’t push the calcium in to the bones then I’ll have to contact the doctor somehow. I’m sorrry if I give you a wrong impression in my last post.

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    One of the first things I usually tell people is to read http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/. It is very important so please read it. Now there is no mention of calcium there because everyone assumes that if you are eating well it is real easy to get enough calcium in your diet without supplementing. (The RDA for an Adult male is 1000). There is only one problem when someone is real low on Vitamin D and then someone prescribes a large amount of D, it needs a lot of calcium. If you do not have enough, you will then probably become HYPOcalcemic. If calcium levels go low enough, it came become life threatening. Most people do not get enough magnesium in their diets and when they take Vitamin D they get symptoms of HYPOmagnesemia,
    So unless you are consuming more than the 1000 and the upper is 2500, I do not think calcium is the issue. The Mayo clinic says “Taking excessive amounts of calcium or vitamin D supplements over time can raise calcium levels in your blood above normal.” I think it is too much Vitamin D causing it because you dd not have these symptoms before D and .your calcium levels were normal.
    NOW I said before that maybe the 10,000iu a day was just too much for “you”. So at the very least I would stop the Vitamin D until those symptoms stop. Then you could try a lower dose. Since you have 10,000’s take one twice a week (that’s about 2800 iu a day) and see what happens. If the symptoms return then consult a doctor. If the symptoms do not return then try one three times a week, that’s about 4200iu a day. Now I just had someone post who swears he cannot take big amount once a week but must take a smaller amount each day in order to avoid insomnia, somewhere between 2000-2500iu. He said it has nothing to do with co-factors because he has taken them all. (So now I wonder if he is not getting enough calcium or his body just does not want more than that a day. Who knows!
    Now what you are trying to suggest is if you are “missing” or do not have enough of a co-factor like K, could that cause issues? K does direct calcium to bone but my problem is where did the “too much calcium come from” if you are not overdoing it in your diet or supplements? It is more likely to see Hypocalcemia because the Vitamin D would want to send the calcium to your bones thus causing a “shortage”.
    Maybe for some people, if you try and correct a deficiency too fast, it will cause problems. Sorry but we are now into unknown territory and just my conjecture.
    Let me know what you think!

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    Hi IAW,

    Thanks for your detailed reply. I had the fortunate event to be able to go to the hospital last night and while there they ran some blood tests on me, including calcium. Calcium was at 2.41 , which is slightly up from 2.38 before. So I’m thinking we can discount calcium being the issue at the moment.

    One thing I’ve observed during all this is my blood sugars have been slightly raised when taking the vit d supplements. I say slightly because by the time I’ve taken the blood sugars its been many hours after I took the supplement and they were still slightly raised. When I first took some low dose vitamin d tablets (a different medication to what I’m on now) later in the day I took my blood sugar and it was slightly raised. I had put this down to there being sucrose in the tablet. Infact, I have tried this medication before I had vitamin d deficiency symptoms years ago and I felt abit ‘strange’ then. The same thing happened when I took them recently. My blood sugar many hours after eating anything was still slightly above normal at 8.3 (150 on the US scale). When taking this new liquid version of vit d (with no sucrose in it) I still got the strange feeling. Last night at the hopsital I hadn’t eaten for 6 hours yet my blood sugar level was 7.5 (130). I know these figures are only just outside of normal range. But these were taken many hours after I had eaten anything and usually my levels arent that high in those situations.

    I guess my question is, does vitamin d affect blood sugar? I know it won’t for many people as my girlfriend is type 1 diabetic and she has 10,000iu a day with no side effects. I guess the only way I can tell definately will be when I eventually take a dose of vitamin d and get the clouded head situation and take the blood sugar then. For the moment though I am going to wait a few days, then start on a low dose and I’ll still take the blood sugar reading.

    I was doing 10,000iu per day. I was on my 6th day of taking that. It seemed a lot to start me at. Hopefully if I do take a lower dose I won’t feel any side effects.

    Thank for for engaging in my situation IAW. I really appreciate your input and experience in this area.

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    So you have Type I and a condition called POTS? (I looked up the POTS but maybe you better tell me what it stands for so I did not get it wrong.
    Close to the top of this page is “Health Conditions” and under that is Type I and II and what we know to this point. In type I it “may help improve insulin sensitivity and help control blood glucose levels” (Did your girlfriend ever find this happened for her?) You can also look on Henry’s website at http://www.vitamindwiki.com/VitaminDWiki. (He has a lot on magnesium and diabetes.) Most people are magnesium deficient!!!
    So it sounds like you have something to monitor that might explain what happens. Like I said the 10,000iu a day was not outrages, but either for you or for you with the conditions you already have, was not good for you. (Too much, too fast?)
    Sometimes I tell people to keep me updated as to what happens so if anyone else has their issue, then I can tell them what happened or what to do. So if you would not mind let me know!

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    Thank you for your reply. I have pre-diabetes or insulin resistance (I think the 2 are inter-changeable?). It means that when my blood sugars go up it takes slightly longer for my body to react to bring them back down. POTS is were the lying down and standing up blood pressure changes slightly i.e. my body doesn’t react as fast as it should do. In order to counter that I take a med called fludrocortisone that holds on to any salt/sodium I have in order to keep my blood pressure at a stable rate. My girlfriend is the one with type 1 diabetes and she had 10,000iu per day with other co-factors too and has no problems at all.

    I’m missing todays 10,000 dose to recover and I’ll lower the dose tomorrow. I’m going to take my blood sugar if I feel any bad effects of the vit d. I’m hoping I won’t. On the magnesium thing, I know this figure was taken before I started the vit d but it was 0.92 I’m not sure what range that is in. It’s from the UK. The consultant said it was normal. I didnt notice if they had run that test at the hospital as I was mainly looking for the calcium result. The doctor at the hospital said all the blood tests they had done was in normal range. He said Urea was slighty high, which means I’m slightly dehydrated.

    I searched around the net earlier and every so often I read about certain peoples blood sugars going high when on vit d, even though for most people it improves their blood sugar control. I’m just hoping a lower does will work for me.

    I wonder how the people hyper sensitive to vitamin d actually recover? Is there different types of vitamin d supplements that would work?

    Anyways I will report back when I’ve taken the next lower dose and change the blood sugar levels after.

    Thanks for your time IAW.

    Answered by  Gavin on

  • Gavin
    Participant
     Gavin on

    Also, just to add another question… can low vitamin d cause frequent urination? I seem to be having an issue with that recently. I’m not sure if its tied to the vitamin d?

    • This reply was modified 3 months, 3 weeks ago by  Gavin.
    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    I will get back to you later today on the questions above. Got to go out right now.

    Answered by  IAW on

  • IAW
    Participant
     IAW on

    FIrst to answer the magnesim test.
    In layman’s terms, standard blood tests for such things as Calcium, Magnesium and Phosphorus ONLY measure “serum levels” of these minerals. Serum levels are a “very, very small percentage” of what is actually needed and stored in a human body. So “no”, blood tests can be within the normal range and you can still be deficient in one or all of the minerals. After researching a while back, I also discovered that you can actually have symptoms of “too much” or “not enough” minerals and a blood test result can still be “in the range”. So for calcium a blood test can only measure 1% of the total body calcium, magnesium it is 2% and for phosphorus it is less than 1%. None of this blood work proves what is happening in your bones or cells! From http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2486454/. (So get some magnesium and you will probably need calcium.I would take the co-factors very seriously.)
    Second be careful with the blood pressure. You may want to look at http://www.vitamindcouncil.org/?s=orthostatic+blood+pressure&submit=Submit.
    Third Vitamin D is suppose to improve blood sugar control.
    Four if anyone is truely hypersensitive there are no substitutions. You would either not be able to take any or you would have to be followed very closely by a doctor who would have to decide if it is doing more harm than good or vice versa.
    Five “can low vitamin d cause frequent urination”. Maybe but I have no proof. The bladder is a “muscular organ” and muscles use a lot of Vitamin D.That is why we do not know if you have hypercalcemia and that is causing it. Or maybe the blood sugar going off. Or lack of Vitamin D. That is why I try and stress what symptoms did anyone have before taking D and if they developed anything “new”.

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    Thanks for the reply and the information.

    A main symptom I had before I discovered about the vitamin d deficiency was dehydration. The medication I am on, fludrocortisone is supposed to hold sodium to keep the blood pressure stable. If I didnt have the medication it would flush out my sodium and dehydrate me. I had thought that the reason I was peeing more was because I thought my potassium was low, i.e. the medication is supposed to tilt the sodium/potassium ratio to sodium, so I thought I had been losing too much potassium. But it turns out it wasn’t and in that batch of blood results it was found the only thing that was very low was vitamin d.

    I’ve just read an interesting thing on the drugs.com site: http://www.drugs.com/cdi/fludrocortisone.html where it says: ‘Fludrocortisone may cause an increase in blood pressure, salt and water retention, and calcium and potassium loss. Talk with your doctor to see if you need to decrease the amount of salt in your diet or take a calcium or vitamin d supplement’. This is the first time I’ve noticed vitamin d mentioned in relation to my main medication. I have had to decrease my salt and didn’t know why. Maybe because my vitamin d levels are so low its upset the balance?

    Tomorrow I’m going to take 1000iu vitamin d at lunch time and monitor myself for any adverse reactions including blood sugars. I’m hoping if the 10,000iu was blood sugars then taking a lesser dose might give a lesser reaction. I guess we can only see tomorrow to see what happens.

    I’m thinking i’ve got 2 issues going on. The symptoms before I started taking the vitamin d and the ones that happened while on vitamin d. Temporaily after day 2 on 10,000iu I did feel better. But then on day 3 onwards I was getting a bad feeling. So it’s like I hit the sweet spot and went over the top.

    I’ll report back wish the results of what happens tomorrow.

    Answered by  Gavin on

  • Gavin
    Participant
     Gavin on

    Ok today I had 1000iu at lunch time, same time as I had the other doses on previous days.

    I took it at 12:34pm and took my blood sugar around an hour after at 1:47pm and it was 7.7 (or 135 on the US scale), which isn’t high after an hour. So I don’t think my head and tired feeling are blood sugar related.

    I think that some of it is circulation as yesterday I didnt take the 10,000 dose and from then until this morning my body felt heavy. But after taking the vit d supplement the heavy body symptom goes and I just get a tired feeling. Is being tired a normal symptom when recovering from vitamin d?

    I was looking over your previous replies IAW and was reading what you said about serum blood levels not always showing the reality of how much calcium is actually working. One thing I don’t think I’ve mentioned before was that just before I was diagnosed with low vit d levels, my tooth actually snapped in half. So I’m wondering if I have very low bone calcium. Is there any way to improve the calcium absorbion from the blood test in to my bones? Would a calcium supplement work, or would that just sit in my blood too?

    Thanks for any more insights you can give.

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    So when I looked up fludrocortisone, just like you said it can affect calcium levels and actually ALL mineral levels. So YOU probably have just enough in you to pass the “blood tests” but are deficient everywhere else in your body!!!
    So unless you get a doctor to disagree, I think you should take all of the co-factors seriously plus calcium since it is not listed there. So you need a minimum of magnesium of 300mg (probably more) and calcium (my guess) 500mg minimum (probably more)
    Vitamin D should only make you feel better BUT if you are LOW in any Vitamin or mineral it uses, then it will not work correctly and/or give you added symptoms
    What do you mean by “So I don’t think my head”?? What is it doing to your head???
    Vitamin D helps to absorb calcium from the intestines BUT if there is not enough in your diet OR your Vitamin D levels were so low to begin with, you are more than likely to have a LOW mineral issue. With your level you probably have adult rickets (osteomalacia)
    You have got to forget about how much is being measured by the blood test. You have to, in a sense, assume that you are and get the calcium AND magnesium supplements and see if they stop any symptoms.
    This is how I also look at it. A severe Vitamin D deficiency and now you take a lot of Vitamin D. Your body says “oh good” now I can start to repair everything that is wrong. I am not sure the amount of Vitamins and Minerals in a daily diet can compensate in the “short run”. (That’s my theory.)

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    Thanks for your reply IAW.

    I agree with your theory. I really need a good multi vitamin tablet. Or do you recommend a certain brand of calcium? I’ve noticed quite a lot of multi vitamin tablets have magnesium but no calcium.

    When I said “So I don’t think my head” line was part of a sentence about the sleepy feeling I’d get when I took the vitamin d. I probably worded it wrongly.

    I do get some calcium in my water and rice milk. But its probably not enough to counter that medication. I never even realised that it pushes out calcium. I only knew about potassium.

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    I think the tiredness is lack of magnesium.
    Sometimes you cannot get everything you want/need all in one multi.
    I have no recommendations except for. Do NOT get one that has too much “PREFORMED A” see the original vitamin link above. Also magnesium oxide does not absorb the best. Any other type is fine.
    So you may have to get the multi and also get extra calcium and or magnesium to go with it.

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    Ok I will do.. I wish I’d have known about the whole calcium thing before. These doctors give out medications and don’t at least recommend to take supplements to balance it out.

    I’ve ordered some vitamins and minerals.. and ive had to order a special calcium supplement as i noticed some multi minerals either dont have calcium in or its in a very small dose.

    Hopefully we’re on to something here! I need to start taking these things anyways. I should have done for years. But at the time I never thought it was a big deal.. boy was I wrong.

    Answered by  Gavin on

  • Gavin
    Participant
     Gavin on

    IAW, can I ask a general question? I’ve noticed online that a lot of people become tired and fatigued when they take any dose of vit d, like I am. I read a lot of people saying it, and people giving advice to them. Do people take the advice and no longer feel fatigued/tired when taking vit d?

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    Well I do not know what kind of advice these people are giving and/or getting. I do not know if you mean this website or other websites. Some people never come back and tell me what happened.
    I had one lady that was actually “hypersensitive” to Vitamin D. Before I figured it out, I told her she needed to take magnesium because that was part of her symptoms. So when we finally figured out and her doctor confirmed that she was hypersensitive, she thanked me profusely for telling her about magnesium because it had been such a help to her. Another one kept getting headaches when she took any amount of D and with magnesium they stopped. Sorry but I have not been keeping track.
    If you read the post below yours, I am trying to convince her to get some calcium. She has no symptoms yet but her calcium level has actually dropped and I am trying to prevent her from getting symptoms.
    Sometimes I wonder about the many people that have gotten symptoms when taking Vitamin D, never tried it again and all they needed was a co-factor to prevent or stop any symptoms.
    This use to be on this website. If you get any of the following symptoms while taking Vitamin D you are most likely Magnesium deficient:
    •Irritability or anxiety, Nausea, Headaches, Insomnia, Fatigue, Muscle cramps/twitching, Weakness and constipation

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    I was meaning generally in your experience. I don’t know if anyone else has said this to you but you have helped many people and do a great service in providing information and advice. I know I’m going to follow the co-factor advice. I’m building up to that. I’ve had to buy other things so I can.

    I just wanted to say I appreciate the efforts you put in and I know for me you have been a good source of information and understanding this vitamin d deficiency. People don’t know how deep the subject is and the effects it has until they get stuck.

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    Thanks Gavin!!!!
    Let me know how things work out!

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    I thought I’d give a minor update. I’m taking 5000iu a day, which seems to be good for me. Also I’m taking between 300 to 400mg’s of magnesium malate (as I used to get big headaches with taking other forms of magnesium). My question is about the vitamin k2. I’ve noticed I seem to get heart palpitations (very difficult to describe and imagine when I’ve never had them before).

    My question is, is k2 vital for recovery or would taking more magnesium keep calcium from getting out of control while taking the vit d?

    Also I recently found out that on the US scale my result was 7.6 ! On the UK scale I’m at 19 nmol/L. So very low. I’m intending to keep at 5000iu and keep on top of the magnesium, probably increasing it a little more.. so its just this k2 I seem to be having some slight issues with.

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    Gavin I’m a little confused. Do you mean that you are taking the K2 and it is giving you heart palpitations?

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    I think it is.. I’m not 100%.. I think some of the blood pressure issues might be abit aggrivated by that medication I take (fludrocortisone).. I’ve just had a smaller dose of k2 now and so far i’m ok. Maybe I need to build up slowly?

    Also I’ve been taking mag 1 capsule in the morning, then vit d at lunch with another capsule.. and then I would take k2 at the same time. I just changed the k2 to have a dinner time (5pm)..

    I guess I’m asking is k2 vital to recover from vit d definciency or have people recovered without it? I know its preferable to have it, so I keep trying smaller doses.

    It could also be because I’ve been that bad for so long it could be helping me lol. It’s difficult to tell with the many symptoms that can happen.

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    This is the very short version of two stories.
    There was a study done with mice that showed lack of K2 and calcium went to soft tissues. The really good news is once they gave them the K the situation “reversed” itself. So reversible.
    Now there have been other studies that show eating enough K1 and humans can “convert ” it to K2. So that appears that if you get enough K1, you’ll probably make enough K2.
    So again if there is enough K1 in your diet, everything will probably be OK.
    Two other thoughts.
    The K2 I decided to take is in the form Menaquione-7. Some Vitamins can be man made or natural. That one is natural from Natto extract. The point is what is yours and if man made “maybe”(?) that is causing issues. (It’s just a thought.)
    Lack of calcium can cause “heart irregularities”.
    So in a sense it is not vital to the Vitamin D but like being deficient in any vitamin or mineral, then the human body cannot function properly.
    So if you think your diet does not have a lot of K1 and K2 ends up bothering you, then you could take the K1 and try that. (pick a natural one not man made just to be sure)

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    Thanks IAW. I’ll definately have a look around for some of those. I’ll have to look up what foods have K1. The confusing thing is a deficiency in any of these vitamins or minerals seem to cause similar things. Sometimes its difficult to pin down. I guess for a while it’ll be trial and error until I get the right combination.

    Thanks for your help.

    Answered by  Gavin on

  • Gavin
    Participant
     Gavin on

    Hi IAW,

    I’m still struggling along with this issue. I have a question for you. I’m not sure if I’ve said this previously but I don’t tend to eat dairy products, so I’m thinking I don’t get much calcium from my diet. Also at the start of all this one of my tooth unexpectedly snapped in half. I’m just wondering how can vitamin d put calcium in to the bones if I don’t each much (if any) calcium? My next question is, should I start eating some calcium, like fish bones and things like that?

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    Could you define “struggling”? Does that mean symptoms and if so which ones?
    Yes, Vitamin D cannot help with bone formation if it does not have calcium to do that. So if your diet does not have enough in it , then you need to fix your diet or add supplements. Now calcium is not only found in dairy products.(Sardines and salmon with bones are good sources.) So you need to look up sources of calcium and see if you are getting enough from other sources.

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    Struggling as in, light headedness.. not getting deep sleep (insomnia), weakness all over.. I’m struggling to even stand up now. I didn’t take any vit d yesterday.. I took a magnesium and my blood pressure dropped.. I still have this hydration issue.. It makes it more frustrating because my medication is supposed to help me hold in water by hanging on to sodium.. but with me peeing a lot I think its dehydrating me of sodium too.

    I just read somewhere that as we dehydrate the concentration of calcium in the blood becomes bigger.. so I don’t know if thats my issue. I just am not sure how to solve this hydration issue.

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    So you are saying that everything is now worse since taking the Vitamin D??? If that is the case then you need to stop taking all of it and wait till your symptoms subside. If/when they do then cut way back and take things a lot slower. For example take 1000iu a day for a month and see what happens. If that works out OK then take 2000iu and see what happens. Your original Vitamin D level was really low.
    I still think it could be causing something like hypercalcemia. I have no idea what happens if someone is on a medication and they start taking the Vitamin D what will happen. Meaning for example if you were taking BP medicine for “high” blood pressure, what happens if the Vitamin D also starts to correct your high BP. Does it mean it could go low? Could it go low really fast and make someone faint?
    You said once “my local doctor (GP) seems to dismiss vitamin d deficiencies”. Can you get another one? If he only wants to recognize Vitamin D deficiency for bone health he is NOT even doing that because the low end of the range in the UK is 30nmol/l and below. You are below that.

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    I notice when I do take the vitamin d I do get some energy from it. I’m wondering if I’m taking enough K2 ? how much K2 should I be taking if I’m taking 5000iu ? Also will taking K2 make me avoid having hypercalcemia? I think your right about my symptoms being that, especially with the dehydration / peeing a lot. The weird thing is I had that symptom before I started on vitamin d. At the time I was blaming it on potassium, because I only thought my med drained potassium. Now I find out that calcium is also drained. But yet I keep having this peeing symptom.

    What seems to happen is my medication uses sodium in the body to keep my blood pressure up and stable.. then whatever is causing me to pee is also making me pee out the sodium, so my medication appears not to work effectively.

    So what things can I do to reduce the hypercalcemia? will increasing K2 do it?

    Btw, today I’ve had 3800iu vit d.

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    I am going to think on this some more and get back to you later today!

    Answered by  IAW on

  • IAW
    Participant
     IAW on

    According to https://www.drugs.com/sfx/fludrocortisone-side-effects.html check with your doctor immediately if you have EITHER increased or decreased urine output.
    From http://www.emedicinehealth.com/low_potassium/page3_em.htm
    The symptoms of LOW potassium include
    • Weakness, tiredness, or cramping in arm or leg muscles, sometimes severe enough to cause inability to move arms or legs due to weakness (much like a paralysis)
    • Tingling or numbness
    • Nausea or vomiting
    • Abdominal cramping, bloating
    • Constipation
    • Palpitations (feeling your heart beat irregularly)
    • Passing large amounts of urine or feeling thirsty most of the time
    • Fainting due to low blood pressure
    • Abnormal psychological behavior: depression, psychosis, delirium, confusion, or hallucinations.
    You definitely have some of those symptoms!!!
    I believe taking Vitamin D can also cause low potassium sometimes. I suspect you are getting a “double wammy”.
    So I do not know how long you have been taking the fludrocortisone but you at least need to stop the Vitamin D before you die from what looks like lack of potassium. You may even want/need to go to an emergency room.

    Answered by  IAW on

    • IAW
      Participant
       IAW on

      I also believe your POTS was/is probably caused by the Vitamin D deficiency.

      Answered by  IAW on

    • IAW
      Participant
       IAW on

      There is also a possible connection between POTS and a B12 deficiency.

      Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    Hi IAW,

    Well yesterday I noticed something that I had changed in the other medication I take, Tostran, for testosterone replacement. I found out that it steals salts from the electrolytes. I had previously doubled my dose for quite a while.. so I’m going to reduce it back down to 1 dose.

    At the moment the last electrolyte tests I’ve had shows potassium about 4.6, which is high for me. At one time it was 3.8 and I was concerned it was going to low. That’s actually what got me worried about all this in the first place. On that same 3.8 result showed me testosterone level lower than what I wanted.. so I doubled my dose. That was 6 months ago. During that 6 months I had mild symptoms coming on and assumed my potassium level had dropped. But actually found it had gone up and my sodium level was now low.

    The low sodium wasn’t really expected because my fludrocortiseone medication should have been holding on to it. The fact its not is probably why I’m drinking water and then peeing it all out, i.e. nothing is sticking.

    I lowered my dose of tostran down to 1 pump (its a gel pump) in the hope that it will leave my salts alone. So far today, before I took the dose I was managing to hold a bit of water. Then I took the dose and now so far peeing out again.

    I know it takes 2 days for the hormone to reduce to reflect the treatment. Also I’m assuming if its been stealing salts that the fludrocortisone needed, then part of this process is going to have to be getting the salts back in.

    I’m not sure how much this has to do with vitamin d. I suspect some of it does, as you said in your replies. I also would like to have a b12 test too. I thought the blood forms might have come today.

    I’ll keep you updated. I’m hoping that tostran medication is the culprit and I can somehow at least get enough salt in me so I start retaining water again. I might stop the vitamin d supplementation so I can be sure whats effecting me.

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    Gavin three things.
    Vitamin D effects testosterone levels. If you get enough Vitamin D then levels should increase. (Wished you would have told me sooner.)
    “Serum potassium concentration does not always reflect total body potassium; therefore, hypokalemia could coexist with BOTH NORMAL or low total body potassium” from http://www.ncbi.nlm.nih.gov/books/NBK307/.
    I did find where Dr. Cannell once said when starting to take vitamin D for the first time, that insulin levels will increase for several weeks before they do decrease and then stay more stable.

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    I noticed that my blood sugar levels went slightly up for about 2 weeks when I started vitamin d. My main issue at the moment is trying to raise sodium levels. I’ve never been this low, and have that fludrocortisone medication thats one job is to increase sodium retention.

    I’ve got an appointment with the consultant tomorrow night, so I’m going to challenge her a bit and hope that she at least suggests other tests to do. Shes the one who did the vitamin d test and got that result. It’ll be interesting of what comes of it. Most of my dehydration symptoms come from the low sodium level, but so far I’ve not been able to figure out how to increase it.

    I’m going to stop vit d for a few days as doesnt high calcium cause frequent urination too? Though I have noticed that on a full blood test done a few years ago my calcium was 2.44 so far in the recent blood tests its been 2.38 then 2.41 so that shouldnt really be causing me the issue. It’s confusing. Unless something else is causing me to lose sodium. I’ve never had this issue before. Even before I was on those meds I used to drink salt water to compensate and it did increase my sodium, although of course that action isnt advisable etc. But at the moment not matter what I do I’m having an issue increasing it.

    Answered by  Gavin on

  • Gavin
    Participant
     Gavin on

    Hi IAW if your around :)

    I had the appointment with the consultant. She wasn’t for moving, though she did agree to run blood tests on other things like iron, b12 and cortisol.

    Also I’ve noticed something recently while looking over 2 recent results.

    On or just before the 23rd of May I had some blood tests done and my TSH was 2.78 (range 0.35 to 5.00) with T4 being 18.5 (range 9 to 19). Both seemed to be slightly higher than my previous tests.

    Then I started on the vitamin d supplments.

    A few days ago I had to go in to hospital and they ran standard blood tests and I noticed they did a thyroid test too, so I asked them for a print out of the results. The TSH then was 1.42 and T4 was 15.

    I did some googling and it appears this seems to happen to a lot of people. When they start taking vit d supplements their thyroid numbers drop. Is this normal? Does this mean the vit d is making the thyroid work more efficiently? What’s the vitamin d councils opinion on this? I guess I’m asking because I’m a little worried that its dropped, so looking for some reassurance I guess.

    Hope you are doing well IAW?

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    How could I ignore a “happy face”!
    What did you mean by “She wasn’t for moving”?
    May’s TSH is actually high and new one is “normal”. (TSH average normal is 1.5.) Yes Vitamin D does effect thyroid. My “guess” is in the conversion. T4 cannot be used as is and must be converted to T3. Even though your T4 level went down, your T3 level probably went up but they did not test that. (Even if the T4 range is 9-19, anything below 15 is really suspect. It’s too long of a story but basically the range is skewed too much left.) So at the moment your TSH and T4 look fine to me. (Besides Vitamin D I know a lot about hypo and hyperthyrroidism.)

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    Thanks for the understanding and explanation IAW. I think on the next tests I’ll try and get a full thyroid test done. I’ve just discovered a place that sends out home kits and they are a company with a good reputation.. they even have the option to have blood tests done in private hospital labs.

    When I said “She wasn’t for moving”. I mean that as far as my symptoms I think shes still at a loss. We had a debate about the medication I’m on about sodium. I suspect my problems are coming from a few possible areas… things I’d changed since feeling well. Like my cpap machine (I have sleep issues and use a machine). The med people changed the settings. I’m due an appointment with them on friday to change the setting again. Then today I finally managed to get in to the blood lab and have a blood draw so thats testing iron, b12 and things like that. Hopefully this will lead to an elimination of possibilities and hopefully highlight something. I’ve had bad digestion for quite a while so I’ll be surprised if things are absorbing well. But I guess we’ll see. I’ll update with more info when I get those results back.

    Thanks for being there IAW!

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    Gavin sometimes I feel we are not making any progress and then you say “things I’d changed since feeling well”?? So do you feel somewhat better?
    Then you add something like needing a CPAP which you did not mention before this. So besides the whole “sodium” thing, dehydration, frequent urination, POTS, CPAP, insulin resistance and low testosterone, what other symptoms do you have?????

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    Ok well the treatments/medications I have are cpap that I use mainly when sleeping for co2 retention. Tostran for tesotsterone replacement, and Fludrocortisone for salt insufficiency. The 2 medications are both affecting hormones, testosterone and aldosterone being low.

    I don’t feel any better and today seem to feel worse with circulation problems.

    I’ve changed my medications back to how they were before this started (I had stupidly increased my tostran dose, but the endo said this shouldnt have caused these problems). At the time I thought I had needed to increase my fludrocortisone med as the purpose of it was to retain sodium and keep potassium in check.. so when I saw the potassium now increasing and sodium dropping I thought I needed to increase the dose.. this change made no effect. So I’ve not gone back to the normal doses.

    As for the cpap (more specifically bipap.. bipap means there can be 2 different pressure settings for inhale and exhale), the doctors were concerned my co2 level was going higher.. so they changed the settings on the machine so it would pull co2 off me more.

    Then gradually these issues came on. I got the low vit d result. But ive never been tested for other things like b12, iron or even cortisol as my adrenals must have been having issues for those hormones to be low, especially the aldosterone.

    So I’m trying to figure out is my current condition the result of changes I made, or the result of new deficiencies.

    On friday I’m going to a sleep clinic to see the nurses so they will assess the machine settings. I’m also waiting on those blood test results.

    I’m sorry that I haven’t mentioned the cpap stuff earlier. I didnt really think it was an issue until I started thinking about everything that has changed since feeling well and now not well. I’ve been on cpap for about 13 years with no problems. So it wasnt the first thing I tend to think about when things are going wrong. The more recent meds were the hormone meds. I’ve not been 100% since 2008 for various reasons. But until recently I’ve been content with no major issues.

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    http://www.vitamindcouncil.org/?s=sleep+apnea&submit=Submit
    If you can get any more thyroid testing done try for the following a Free T3 test, a Thyroid peroxidase antibody (TPO) and a Thyroglobulin antibody (TGAb). Even though your TSH looks fine and the Free(?) T4, you could still have a problem.
    My understanding of B12 is the level should not be below 550 no matter what the range states.

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    Hi IAW,

    I think I’ve figured out why I’m in the situation I am.

    I went to the sleep clinic last friday and they discovered the pressure was too high on my machine. They have now turned it down a few points. As I’ve mentioned before I use fludrocortisone which can also put blood pressure up because it holds on to sodium.

    I think there as been some kind of competing pressures, especially in my head, so as the cpap setting was turned up I subconciously stopped taking much sodium/salt, so the fludrocortisone became less and less effective, which as led to my dehydration symptoms.

    So now I’m wondering if the pressure will go back to how it was before.

    I’m also going to re-start more regularly the vitamin d supplements as ive heard that can lower blood pressure, which in this situation would be a good thing.

    I wish I had more medical oversight during this situation. I’ve never had cpap issues before and ive used it for many years, thats why I never thought that it could have been the issue. I wish I had realised earlier.

    BTW the B12, iron and ferritan all came back good, well in the range.

    I thought I’d keep you updated :)

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    Yes Vitamin D can lower blood pressure. I wish you could have more medical oversight to make this easier for you.
    So do you think taking the Vitamin D caused you to need a “lower setting” on the machine or do you think it is just a coincidence?

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    Hi IAW,

    I’m not 100% sure. I noticed on some medical pages for co2 blood tests (which my machine is trying to reduce co2 in me) it says fludrocortisone increases co2. So I think when my appointments were in the morning I’d just taken the fludrocortisone so my co2 level was higher, so they changed the machine settings to compensate. But when it got to the night time when the medication was wearing off I was hit by the higher co2 settings on the machine, which probably took my co2 lower.

    I do have a question though. Can vitamin d deficiency interfere with electrolytes? I’ve noticed on a few websites there is mention of a connection. If it can, then I’m thinking vitamin d deficiency might be ultimately behind my electrolyte imbalance. Also I’m having a difficult time re-hydrating too. If I take any electrolyte drink (a special hydration mixture) i’m having to drink it very slowly. I’m not sure if this is because I’ve been so dehydrated or something else is going on.

    I wish I had more medical oversight too as this all seems a bit of a balancing act between co2, my fludrocortisone and now trying to bring up my electrolytes again.

    Thanks for being there for advice IAW. You’ve been a light in a dark tunnel.

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    HI Gavin!
    Did they ever give you an explanation of “the why” you have too much CO2 in your blood? I found a list of reasons and was wondering what it was in your case?
    Now I am confused again. Do you have low or high blood pressure???
    Low Vitamin D can definitely cause hypocalcemia (not enough calcium) and hypophosphatemia (not enough phosphates). (It would not surprise me if it effects other minerals also.)
    “i’m having to drink it very slowly”, why what is it doing or not doing??

    Answered by  IAW on

  • Gavin
    Participant
     Gavin on

    Hi IAW,

    I was born disabled and one of the problems is that my spine was curved to such an extent that it was crushing one of my lungs and damaging the other. So they have never worked fully. In my 20s I started to retain co2 for some reason. I was passed out with too much co2. Eventually they found the issue and put me on a cpap machine to pull the co2 off. Luckily so far I’m not having to use oxygen.

    About 8 years ago I got very ill and I think it was the dehydration issue. But at the time the doctors were doing tests and found my testosterone was low, so they blamed it all on that. 3 years later I was still very ill. I was bedridden and I couldnt even focus with my eyes properly (yet the stupid doctors didnt realise it was dehydration!), then I found this current endocrinologist and she put me on fludrocortisone, which holds on to sodium. Eventually I was rehydrating. I never knew until a few days ago that this fludrocortisone interacts with co2. I don’t think either the endo or the doctors responsible for my breathing realise either.

    This current situation all seemed to start when the settings were increased on the machine because my co2 was getting higher. I’m just wondering that for 4 months the pressure in my head was more than it should have been. Since the settings were turned down, a lot of brain fog disappeared. So it must have had an effect.

    I have a salt deficiency.. so before I went on fludrocortisone I had low sodium and high potassium. So that made me feel light headed. It also was stopping me from hydrating. It seems when the body loses water it attempts to increase blood pressure to keep a person up right and moving around. So even though my hydration was bad, on the blood pressure tests it showed as my pressure was on the higher side.

    When I went on the fludrocortisone it increased my sodium (and wasted some potassium) and my hydration slowly returned and the blood pressure went down to normal.

    It feels like something as caused high blood pressure for me, so when I have anything with salt/sodium in and the fludrocortisone holds on to it, that pushes the blood pressure too far. This is what i first noticed happening at the start of all this. I started to not have as much salt on my food. The problem with having no added salt is the fludrocortisone does nothing to retain water yet still gives me the blood pressure situation.

    I feel something is causing me to have higher blood pressure, or at least head pressure than normal and its not giving the fludrocortisone a chance to work correctly.

    I’m thinking its either the machine settings change, or as a long shot this vitamin d deficiency as I’ve noticed vit d deficiency can cause a lot of symptoms too.

    Whatever it is i need some kind of medical oversight. I’ve managed to get in with my registered gp. This will only be the second time ive ever seen her. That appointment isn’t until the 14th. I also have the sleep clinic regular appointment on the 20th too. Hopefully something can come of it.

    I’m going to start supplementing a low dose of vitamin d, maybe 2000iu to see how it effects me. I’ve ordered some more vit d supplements from the doctors too. I had stopped vit d just to eliminate things to find out what might be causing this situation. So now is the time to re-introduce it I think.

    I just wish this situation would come to an end. I’m getting sick of it. I’m sorry for the long post.

    Answered by  Gavin on

  • Gavin
    Participant
     Gavin on

    PS. when I was drinking the rehydration drink it was making me spacey.. like the fludrocortisone was grabbing on to the sodium and putting the pressure up. Something is definately out of balance somewhere in my body.

    Answered by  Gavin on

  • IAW
    Participant
     IAW on

    First of all do not be sorry for the long post because it helped me to understand better!
    Now I am just going to throw some miscellaneous thoughts out there.
    You said “started to retain co2 for some reason” meaning you were OK up until then. So maybe you have been Vitamin D deficient a long time and that is what started that since you “were ok before that even with your problem. So if you take any Vitamin D, then it just may affect the levels and the machine settings. (Let alone the interaction you are saying with the fludrocortisone.)
    I do understand now why you are very careful on the “potassium levels” since they were high once. Just keep in mind that could change with taking Vitamin D.
    Was there an explanation for the initial low sodium or not really? Hypothyroidism can cause low sodium. So above I said “If you can get any more thyroid testing done try for the following a Free T3 test, a Thyroid peroxidase antibody (TPO) and a Thyroglobulin antibody (TGAb).” “Even though your TSH looks fine and the Free(?) T4, you could still have a problem.” This is because a high antibody level will negate your thyroid hormones so they cannot work even if you have plenty of them.
    Do you know approximately how long it has been since stopping the Vitamin D? Yes if you are going to take any, make it a small amount.
    Maybe the doctor should agree to see you every week for a while? Maybe they should put in a “standing order” where they check your mineral levels every week while taking the Vitamin D?
    If I think of anything else I might add it later, so come back every once in a while to see if I had any more “thoughts” especially before you see a doctor again.

    Answered by  IAW on